Archive | June 2013

Celebrating Ken

Ken’s Mother held a memorial service for Ken this past Sunday. The priest did a good job of balancing his thoughts on Ken’s beliefs and also speaking to Ken’s contributions including this blog.

Here is the bio that was on the church bulletin… 

Kenneth William Maudsley

Kebo

Ken was born in Hollywood, CA on May 3, 1970. He graduated with honors from Gadsden High School where he was voted 1 of the 10 Most Notables and he went on to attend Huntingdon College in Montgomery, AL where he graduated with a BA in Fine Arts & Mathematics in 1992. Ken was an active member of Sig Ep fraternity. He completed his education with an MS in Statistics from Auburn University in 1994.

He then moved to Atlanta where he pursued his interests in graphic design and also met his wife Tina. He had been working for the past 12 years as a Vice President of Digital Strategy at Max Productions.

Ken & Tina were married for 15 years and then Ken was diagnosed with Glioblastoma Multiforme  – GBM (terminal brain cancer) in August of 2011. He was mindful of the power of positive thinking and making every interaction and relationship a positive experience.

Ken enjoyed gourmet cooking, painting, scuba diving, driving & working on his motorcycles, travel, and spending time with his cats Mila and Pickles. He was a member of the RB Motorcycle group where he designed their t-shirts for the past 10 years. His blog, Glioblasted.com, has been an inspiration to hundreds of people including GBM patients and caregivers. He has worldwide followers who he has given advice & guidance to for the past two years of his fight. Ken & Tina’s personal journey and their willingness to share will live on as a legacy for the future.

After his diagnosis, Ken wrote this mantra…

“To live healthy.

To let love rule.

To release my creative genius.

Get better…every day”

 

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Ken will be cremated tomorrow & his ashes will be delivered to me on Friday. Our friend Phil made this beautiful vessel out of cherry wood to hold Ken’s ashes (the top is made out of figleaf maple burl). The top piece is Ken holding his arms in the air & is so special because that’s what Ken liked to do on vacation as in the featured image above of Ken in Maui, Hawaii at the Seven Pools.

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I hope to continue this blog to tell more of Ken’s story through the celebrations and then at some point start writing from the Caregiver’s perspective.

We will be holding an Atlanta, Georgia celebration to honor Ken Saturday, July 13th.

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No more pain

This is undoubtedly the hardest post I will write, but it must be done (this is Tina). My beloved Ken passed away this morning peacefully and his dreaded fight with GBM has now come to an end.

Thank you all for the beautiful comments, support and love you have bestowed upon Ken and me on our journey.

Love,

Tina

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Transitioning

Hi everyone,

This is a post from Tina, not Ken. I wanted to provide everyone with an update that Ken’s situation has gotten worse. He has had two seizures in the past 24 hours, is sleeping now most of the time and is eating less.

I want to thank everyone for their continued support with donations, meal train and all the other things that have helped us to get through this awful time.

All my love,

tina&ken

Tina

Seizure Free

Since my last seizure Memorial Day weekend, I am happy to report that I haven’t had any seizures! I attribute this to the change in my diet by upping the level of MCTs, medium-chain triglycerides, to 100% by adding more liquid coconut oil. Medium-chain triglycerides are generally considered a good biologically inert source of energy that the human body finds reasonably easy to metabolize.2013-05-07 18.13.47

tina&kenwheelchairpic

 

 

 

 

 

CDX-110 Update

We are glad to report that the medicine will hopefully arrive in two weeks time. I will be weaned down on my dexamethasone medicine from 4 grams daily to 2 grams so that the experimental medicine can boost my immune system to fight the cancer.

Atlanta Cancer Care Fundraiser Video

Tina and I were interviewed to be included in a fundraising video for the Atlanta Cancer Care Foundation (see link below).

Ramp Progress

rampowlpic

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My sister Sharon has been visiting for the past week. She’s been a great help with meals and she’s added to the ramp.

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We have useful tools that we need to deal with this stage of my illness. Our handicapped tag finally arrived & I have a hospital bed for when needed (I continue to scale the stairs at night to get into my own bed).

CDX-110 Update

Northside Hospital sent the contract to Celldex last week and they have sent back some of the documents needed to the clinical trial coordinator here in Atlanta so that she can start the preparations to be sent to the FDA for final approval. Hopefully, all will go smoothly now and I will get the medicine soon.

New Equipment

I received my twin sized hospital bed a few days ago which is located in the library of our house downstairs. This way I can look out at the garden and hear our fountain outside. Our physical therapist also recommended that Tina use a gait belt to help me with moving around, transfers and to ease/prevent falls.

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Hospital Bed in Library

How am I Doing

Well, I have had two more focal seizures this week; one probably due to caffeine, drinking strong, Finnish coffee (caffeine is a potent stimulant and trigger for seizures – Tina tried to warn me not to have the coffee but I insisted) and the other from overexertion, both of which are triggers for seizures. My threshold for seizures is definitely low. As a result, our dietician has modified our diet too by increasing the MCT oil or liquid coconut oil in all of our meals. We have been eating modified meals since Wednesday evening and my glucose this morning was the lowest it has ever been, 65 which is great news! GBM cancer cells depend on glucose for energy supply and survival. When glucose levels are reduced, normal brain cells metabolize ketone bodies for energy. Brain tumor cells cannot do so. This makes the tumor cells vulnerable to death using therapies that target glucose metabolism.

I am experiencing more fatigue but am keeping my energy level up by continuing physical therapy and painting my wheelchair ramp.

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Closeup of Healing Floral Designs on Wheelchair Ramp

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Wheelchair Ramp

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Me Painting my Ramp

I had another pranic healing session yesterday and am hoping to start Qi Gong next week (my neighbor teaches and has offered to come to the house to do one on one sessions).